Psychologists’ work focuses on equipping individuals to live healthy, meaningful lives throughout the life span. While much of psychology seeks to prevent and address physical and mental health issues with the hope of a long life ahead, the work of psychologists is just as important when it’s possible—or even likely—that a person won’t recover from illness.
Unlike psychology, the field of palliative care is relatively new. The World Health Organization officially recognized it as a specialty in 1990, and since then, palliative care programs have emerged in hospitals and outpatient settings. While physicians and other health care providers play an important role in alleviating patients’ symptoms, psychologists are uniquely positioned to address the gamut of cognitive, mental, and emotional needs that arise during life-limiting illness.
“The end of life is a lot more than a medical event,” said Dale Larsonopens in new window, PhD, a professor of counseling psychology at Santa Clara University and an end-of-life researcher. “Psychologists are vital in these care settings because it’s our job to help people cope with stress, loss, and changes in identity, all of which apply in illness and end of life.”
Psychologists are often embedded into multidisciplinary care teams in the Veterans Affairs (VA) health care system and some academic hospitals and pediatric palliative care programs. But because of systemic constraints, psychologists aren’t always directly involved in palliative care.
Underfunded health care systems may not be able to afford psychologists, said Kate Hinrichs, PhD, a palliative care psychologist at VA Boston Healthcare System. Further, there is a shortage of psychologists trained in palliative care. “While there’s a significant demand in needing help for distress at the end of life, there aren’t many specialized training opportunities for psychologists,” said Katherine Ramosopens in new window, PhD, a geropsychologist and palliative care psychology researcher and assistant professor of psychiatry at Duke University.
Palliative care teams often include master’s-level clinicians, such as social workers, who are often overloaded with care coordination, case management, and advanced care planning or not trained in addressing certain mental and behavioral health issues. Palliative care clinicians may consult with psychologists or refer patients to them as needed, but not as frequently as may be beneficial. One study found psychologists provided services to just 24% of palliative care inpatients and 19% of outpatients in a major comprehensive cancer center between 2013 and 2016 (Ann-Yi, S., et al., Journal of Pain and Symptom Management, Vol. 56, No. 3, 2018opens in new window).
Recognizing their unique expertise, many psychologists are finding ways to help more people in need, from developing end-of-life psychotherapies and assessment tools to providing psychology-informed support to front-line providers. “Psychologists on the ground are valuable, but if the system is set up in a way where they aren’t there, we have to think of alternative ways to influence these processes,” said Kelly M. Trevinoopens in new window, PhD, director of the Psycho-Oncology in Aging and Cancer Laboratory at the Memorial Sloan Kettering Cancer Center in New York City.
[Related: What is palliative care?]
Why psychologists?
Life-limiting conditions are mentally taxing, potentially exacerbating or inciting symptoms of anxiety, depression, and trauma. “This time is the nexus of so many important psychological issues,” said Brian Carpenteropens in new window, PhD, a professor of psychological and brain sciences and aging researcher at Washington University in St. Louis. “It’s the climax of a person’s being and life span, and we should be paying more attention to it.”
Serious illness can also include complex presentations of cognitive decline. Psychologists can help differentiate between trauma symptoms, mental illness, or medical decline, said Rachel Weiskittleopens in new window, PhD, an assistant professor of geropsychology at the University of Colorado, Colorado Springs.
Psychotherapy is an important part of improving palliative care patients’ quality of life. Reducing mental health symptoms can help patients engage more meaningfully in their lives, including participating in decisions about their care. “If we have someone so anxious about dying that they can’t engage in goals about end-of-life decisions, supportive listening from another provider may not be enough,” said Rachel Kentoropens in new window, PhD, a pediatric palliative care psychologist at Texas Children’s Hospital. “We can use therapy to help with the anxiety so they can move forward approaching what the end of their life will look like in a more manageable way.”
Psychological principles can also help ease physical suffering. Veronica Shead, PhD, a palliative care psychologist at VA St. Louis, said she often uses pain management interventions such as relaxation techniques and psychoeducation about the body-mind connection to help improve patients’ pain. “I also teach people how to advocate for themselves as a patient and improve communication surrounding their health care,” she said.
Given their experience in goal-setting, conflict management, and motivational interviewing, psychologists are also well-suited to liaise among patients, families, and medical providers during stressful treatment decision-making and transition of care discussions. When patients are dealing with complex cases, psychology experts can help them navigate grief and existential issues.
Kimberly Hiroto, PhD, a clinical geropsychologist at VA Palo Alto, said she frequently counsels patients through guilt about their lives or the way their decisions may have contributed to their illness. “A veteran may have used alcohol to cope with war trauma, but he may not have had resources to cope with PTSD [posttraumatic stress disorder], and we can help him understand the complex systemic factors involved,” she said.
In addition, psychologists can bring to end-of-life care their expertise in life span developmental psychology to better understand people in light of their life journey, not just based on the latest chapter of that journey. According to Silvia Sara Canetto, PhD, a professor of applied social and health psychology and counseling psychology at Colorado State University, psychologists can also contribute to end-of-life care insights from psychological research about bias, discrimination, and intersectionalities. “Gender and racial biases and discrimination throughout the life span contribute to inequalities in end-of-life resources and options” said Canetto (Slater, L., et al. [Eds.], The Complete Guide to Mental Health for Womenopens in new window, Beacon Press, 2003).
“In the United States, a prevailing belief is that women do not contribute economically to their family and society as much as men do,” Canetto said. “This belief is a factor in women being offered less quality of medical care at the end of life as well as before.” Further, Canetto said, it influences women’s own diminished entitlement, as documented in studies that find women are less likely to express a preference for life-extending care (Professional Psychology: Research and Practice, Vol. 50, No. 1, 2019opens in new window).
Just as important, addressing death-adjacent issues can also inform psychologists’ work and lives in broader ways. “We learn to embrace living fully until we die when we are doing this work, and we can focus on our own lives and what matters to us so we can do the same for our patients and their families,” said Julia Kasl-Godley, PhD, of the Wright Institute.
Developing palliative therapies
Traditional application of evidence-based therapies may not be effective or appropriate for people with serious illness, so therapists often need ways to adapt interventions to meet the unique needs of a patient with different care goals. For example, a patient with chronic pain or fatigue may not be able to withstand a 50-minute therapy session, while a hospice patient may not be able to participate in 12 weeks of ongoing treatment. “We have to ask ourselves, how do we triage people’s needs and flex our interventions from there?” said Hinrichs.
In response, many psychology researchers are developing interventions specific to palliative care and hospice settings, either adapting existing treatments or creating entirely new ones that can be delivered by psychologists, master’s-level clinicians, or even via mobile apps.
Joseph Greer, PhD, a clinical psychologist in the Center for Psychiatric Oncology and Behavioral Sciences and codirector of the Cancer Outcomes Research and Education Program at Massachusetts General Hospital, researched the most clinically meaningful elements of cognitive behavioral therapy (CBT) to create an anxiety intervention more useful for people with life-limiting illnesses (Journal of Cognitive Psychotherapy, Vol. 24, No. 4, 2010opens in new window).
“A lot of the interventions in CBT help people identify and evaluate their worried, irrational thoughts, but for someone with life-limiting illness, these worries are realistic,” Greer said. To better address people’s appropriate concerns during times of suffering, Greer incorporated elements of acceptance and commitment therapy (ACT) and dialectical behavior therapy (DBT). He’s in the process of testing multiple mobile app interventions that allow patients with advanced cancer to self-treat mental and physical concerns with evidence-based symptom management and acceptance techniques (Oncologist, Vol. 24, No. 8, 2019opens in new window).
In addition to anxiety and depression, life-limiting illness can also cause trauma or trigger past trauma. Palliative care patients may not have the mental or physical capacity to undergo traditional trauma therapy, which often lasts 8 to 16 sessions—and these modalities may result in greater temporary stress before resulting in ongoing change.
To help ease trauma symptoms in patients, David Feldmanopens in new window, PhD, a professor of counseling psychology at Santa Clara University who researches end-of-life issues, developed Stepwise Psychosocial Palliative Care (SPPC), which rolls out evidence-based trauma techniques in a way that hopefully provides some kind of relief with each session. The goal is to ease trauma-related distress and increase general quality of life rather than necessarily curing PTSD when a therapist doesn’t know how long they’ll have with a patient (Palliative & Supportive Care, Vol. 9, No. 4, 2011opens in new window).
For example, a clinician might help a patient remove trauma triggers from the environment rather than gradually exposing them, as in traditional trauma therapy. “In the end of life, the goal becomes to raise a person’s quality of life as quickly and completely as possible,” said Feldman.
Grappling with existential questions
Some end-of-life therapies don’t address psychopathology at all. “Some people experience frank depression or anxiety disorders during end of life, but for many, the distress is existential,” said Wendy Lichtenthalopens in new window, PhD, a clinical psychologist and director of the bereavement clinic at the Memorial Sloan Kettering Cancer Center.
Dignity therapy can help relieve patients’ distress by helping them document their legacy (Chochinov, H. M., et al., Social Science & Medicine, Vol. 54, No. 3, 2002opens in new window). Building on this evidence-based therapy, Rebecca S. Allenopens in new window, PhD, ABPP, a professor of psychology and geropsychology researcher at the University of Alabama, helped develop the Legacy Intervention.
This family-based intervention includes three home visits during which an interventionist works with a family to create a personal legacy, such as a scrapbook with photos or audio-recorded stories. Intervention participants reported not only increased meaning but decreased breathing difficulty (Journal of Palliative Medicine, Vol. 11, No. 7, 2008opens in new window). Allen said laypeople, such as college students or older adult volunteers, can also support palliative care patients using psychologist-developed interventions. For example, she developed and studied two additional interventions that train volunteers as palliative care mentors who lead reminiscence and art therapy activities to improve patients’ quality of life (The Gerontologist, Vol. 56, No. 2, 2016opens in new window; Clinical Gerontologist, Vol. 45, No. 2, 2022opens in new window).
Along with improving family communication and individual stress, existential interventions such as meaning-centered psychotherapy can help people explore and access sources of meaning in their lives to help buoy them as they face a poor prognosis (Lichtenthal, W. G., et al., Psychiatric Times, Vol. 37, No. 8, 2020opens in new window).
“In spite of life-limiting illness, people can connect with things they enjoy in different ways,” said Kristen Dillon, PsyD, ABPP, a clinical geropsychologist in hospice and palliative care at VA Bedford in Massachusetts. “For instance, if someone loves baseball, maybe they can’t play it, but they can still watch it and engage with it in a meaningful way.”
Meaning-centered psychotherapy can also decrease patient distress by highlighting where they have choices in situations that feel beyond their control. This can empower them to make health care decisions guided by the values they have identified. For example, a cancer patient who decides to go through chemotherapy may feel stress about side effects. Reflecting on the “why” behind that decision—such as extending their life to spend more time with their children—could empower them in the process. Similarly, someone struggling with the decision not to receive treatment may be reminded that quality of life is most important to them. “Part of our work is to highlight how individuals are making choices despite the limitations they face, invite reflection, and amplify why these choices matter to the individual,” said Lichtenthal, who has worked with meaning-centered psychotherapy developer William Breitbart, MD, on evaluating, adapting, and disseminating the intervention.
Supporting providers
Psychologists play an integral role in supporting those working directly with palliative care patients. The initial conversations about beginning palliative care or transitioning to hospice can be gut-wrenching, and because psychologists are not always available or called on for these discussions, many are developing broadly sharable resources. Trevino, for example, is currently developing an intervention that will train social workers to help patients and their loved ones communicate about end-of-life care.
To offer emotional support to palliative care providers, Carpenter led a support group when he worked in an inpatient palliative care setting. Every other week, the full palliative team gathered for psychological support, which included stress management skills and tools for improving the team dynamic. “Often, teams experience difficulties navigating the boundaries of professional competency, or who does what work, which can lead to tension,” said Carpenter.
Psychologists can also create assessment tools that enable health care providers to identify psychological concerns and call on them as needed. Sharla Wells-Di Gregorioopens in new window, PhD, an assistant professor of internal medicine and clinical psychologist specializing in outpatient psychosocial oncology and palliative medicine at The Ohio State University Wexner Medical Center and James Cancer Hospital, developed a screening tool called the James Supportive Care Screening to screen patients for social, psychological, emotional, or cognitive symptoms. It is now recommended by the American Academy of Hospice and Palliative Medicine, the American Cancer Society, and the American Psychosocial Oncology Society for comprehensive supportive care screening and referral (Wells-Di Gregorio, S., et al., Psycho-Oncology, Vol. 22, No. 9, 2013opens in new window; Disability and Rehabilitation, Vol. 42, No. 15, 2020opens in new window).
Many psychologists supervise physicians in palliative care fellowship, which allows for education on psychological principles and best practices. Along with reviewing psychiatric cases and working together to develop plans of care, Wells-Di Gregorio has developed a psychosocial communications curriculum for palliative care fellows that uses simulated patient encounters to teach skills such as diagnosing depression and anxiety, treating opioid use disorder, and how to work with patients who have personality disorders using simulated patient encounters.
Room for growth
While geropsychologists, health psychologists, and palliative care psychologists may work more directly with terminally ill patients, Kasl-Godley emphasized that everyone in the profession plays a role in preparing people for end-of-life stressors and decisions. For example, researchers who study topics like resilience and preventing burnout among health care workers—even if their work doesn’t apply directly to palliative care—provide critical insights about skills necessary for end-of-life settings.
Educators, too, have a unique opportunity to equip the next generation of psychologists, from familiarizing them with the field of palliative care psychology to teaching therapies that apply to individuals facing life-limiting illness. Recruiting more diverse psychologists, said Kasl-Godley, can also help ensure a more diverse workforce.
Clinical psychologists counseling patients about everyday difficulties have an opportunity to instill invaluable tools for coping with the stress of terminal illness: managing uncertainty, emotion regulation, and improving communication skills, to name a few. Psychologists can explore end-of-life decision-making with patients, or even talk about the possibility of death and dying to normalize the experience.
It may seem premature to address the topic of dying with a young, healthy person, but discussing this universally applicable experience can powerfully inform a patient’s relationships with friends and relatives and their daily decisions in the here and now. “The interesting thing about talking to people about death is that you really aren’t talking about dying; you’re talking about how they want to live the remainder of their lives,” Shead said.
